HD Facts at a Glance

Description

• An inherited, degenerative brain disease
• A disease of both mind and body
• Symptoms generally appear between 30 and 50 years of age, but have appeared as young as 2 and as old as 70
• Each child of an HD-affected parrent has a 50% chance of inheriting the disorder and is said to be at risk
• HD usually progresses over a 10- to 25-year period

Characteristics/Symptoms

• Personality changes, depression, mood swings
• Unsteady gait, involuntary movements
• Slurred speech
• Impaired judgement
• Difficulty in swallowing
• Intoxicated appearance

Affected Population

• Approximately 30,000 Americans have HD
• 150,000 are at risk of inheriting HD from a parent
• Affects all races and ethnic groups
• Affects both sexes
• HD does not skip generations; if you don't get it, you can't pass it on
• If you carry the gene, you will develop the disease if you live long enough, and you can pass it on

Challenge to the Entire Family

• Each family member, whether they have the disease or not, is challenged emotionally, socially and economically

Research Breakthrough

• After a 10-year search, scientists announced in March 1993 that they had found the gene which causes HD
• Researchers are now trying to determine what the gene's normal function is and how the flawed gene causes HD
• Many avenues of research are being investigated in the search for a treatment or cure for HD

The Predictive Test

• The gene discovery has made possible a new predictive test for HD allowing those at risk to find out whether or not they will develop the disease
• The new test generally requires a blood sample only from the person being tested, unlike the "old" test which required samples from several family members
• Some testing centers may request a sample from a parent for confirmation purposes
• Pre- and post-test counseling is a necessary important part of the testing procedure
• Persons wishing to be tested should seek out a specialized HD testing center. For a list of testing centers, call or write to HDSA (see below)

Where to Find help

• The Huntington's Disease Society of America is a not-for-profit national voluntary health organization which funds research and operates education, advocacy and family service programs, through a nationwide network of chapters, affiliates and support groups

For further information, call: